Priscillah Namubiru’s story has always been mysterious. She was the sickly girl that left school for home more often and never stopped taking tablets. And yet, even when this could have called for alarm, many of her peers simply thought of her as sickly.
She, too, thought it was on and off malaria and its effects. In fact, it took a life threatening illness for Namubiru to undergo various tests and much as her mother had been against the HIV one, she was found to be HIV positive.
Esther Kangave, Baylor Uganda senior counsellor, says the status of a child must be revealed before or when the said child is 10 years old. “At this time, a child must be aware of why they come to hospital and why they take medicine unlike their peers,” she says adding that the disclosure must be done by the parents since they have a direct connection with their children.
In 2014, The Joint United Nations Programme on HIV/AIDS (UNAIDS) committed to testing and treatment with the aim of having 90 per cent of all people living with HIV know their status, on antiretroviral therapy and with a viral suppression by 2020. And, with such an arrangement, adults with infected children should at least have made their young ones aware of their status.
In 2006, Rebecca Nantege was that parent - having to disclose to Namubiru that she was HIV positive. She had lost her husband years earlier but since she felt healthy, she never found out what took his life or that of their last born daughter. Yet in 2006, after Namubiru tested positive, Nantenge reluctantly got tested too.
After getting a positive result, she now had to confront all this at once; accepting her result and later on, disclose to her daughter; “I can say prayer gave me the courage because I did not know what to tell my daughter,” she says.
Because her health was always a scare, Namubiru immediately started medication.
“At that time I did not take it hard because I was almost coming from the grave,” Namubiru says referring to her sickness before, apparently, she had been rumoured dead at the school she went to and knowing that she was HIV positive was a relief since she knew medication could keep her alive.
Namubiru and her mother were enrolled onto the Baylor programme that helped them access professional counselling and interaction with people in similar situations.
Yet Namubiru’s story remains rare; according to Immaculate Zalwango, a former children’s counsellor, sessions are recommended for the entire family where a child’s status has been disclosed. “If that child is the only one that is sick, all family members should be counselled to avoid future stigma,” she says.
Zalwango notes that unlike organisations that have able and available manpower of counsellors, children in rural areas do not enjoy such luxuries. “In some places, a child will hear about their status as a village rumour and will subconsciously teach themselves how to deal with it,” she says.
What to tell a child
In her experience, Zalwango who has also worked with the Kamwokya Christian Caring Community for more than 15 years says on more than one occasion, a parent and child walked into her house seeking help after a child had overheard adults discussing their status. “And at that time, whether the parent had been planning for a later time or month, you know the truth cannot be swept under the carpet,” she says.
Issues surrounding disclosure of the HIV status have always been complex because of stigma, social concerns, personal reputation and fear of being misunderstood.
David Kavuma, a counselling psychologist at Mildmay Uganda, says a number of people blame HIV positive patients because they assume they got it out of negligence and thus, disclosing becomes complex, especially when there is a child involved. They do not have the ability to handle such news, yet, as they continue growing and interacting with other children, they need to be told so as not to be a danger to both themselves and the friends.
But parents need to consider their children’s age before telling them.
“Knowing the right dose of information adequate for a certain age is important,” he says adding that telling children their status should be in phases from the time they start asking questions; “the more critical the questions keep becoming, the more information they can let out.”
Defending the drugs
Children living with HIV usually have a burden of taking many tablets and visiting the hospital more than their peers which frustrates them. Namubiru, for instance, says at times she got so mad and wondered why she had to take medication daily.
“When children get frustrated, they will end up asking questions like why me,” Kangave notes, adding that it is important they interact with other children in similar situations to learn that they are not alone.
At times though, frustration may come from the surroundings, for instance in secondary school, students generally have a tendency of poking fun at sickly colleagues. “Stigma exists but I did not it,” Namubiru says adding that she instead received pity both from students and teachers.
Some young people though rarely get the kind of support Namubiru received, for instance, Kangave notes that incidents where children are infected while both parents are not sick face stigma straight from their homes. “These are cases where the child is sick because they were either abused or infected by a trusted caretaker,” she says.
They usually face two sides of stigma, either the ‘over caring’ parents that do not allow them to live freely like the other children or those that try to create imaginary barricades between the children separating things such as cups and plates.
Moses Bisaso, the headteacher of Devine High School in Mpererwe, says they usually encourage parents to disclose the status to teachers. The students would be in our care.
Bisaso says they talk to the students to know their medication schedules so as to change their feeding schedules and hospital trips; “We keep their status a secret from the rest of the school but it is always up to them to disclose to their friends if they feel like,” he says.
Namubiru, also a peer leader at Baylor, says the stigma young people face is because none of those around them understand their position. “Progress with HIV has a lot to do with one’s state of mind, if no one is telling a child that regardless of what is in their blood they can still become a pilot, they will never believe it,” she says.
According to a 2011 World Health Organisation (WHO) report on disclosure to children up to the age of 12, healthcare workers are challenged by the fact that there is absence of evidence based policies and guidelines on when, how and under what conditions children should be informed about their own or their parents’ HIV status.
“Consequently, many are uncertain of how to counsel clients about the disclosure process, thus, they may often miss opportunities to assist parents in dealing with these issues and explaining to parents the need for HIV testing and counselling for all their children,” notes part of the report.
The Uganda HIV Counselling and Testing (HCT) policy, 2010, slightly talks about disclosure to children but does not delve into its delicate manner especially when it comes to minors - for instance it lays out that above 12 years of age, a child can consent to their own HCT and that at 10 years, after assessment and consent of the parents, disclosure should be done.
In Kangave’s experience, the lack of a known procedure has continuously left many children in the dark regardless of a fact that they are on medication.